What is CFS/ME?
A neuro-immunological illness usually triggered by a viral infection, which causes abnormalities such as overactivity in the immune system – which then leads to a number of symptoms, which can often be severe enough to cause the person to be bedridden. The illness can be diagnosed after 6 months duration, but can last for years. It affects all ages groups. It affects 3-4 people per thousand.
What led to your interest and expertise in the field?
I learnt about the illness at medical school and later on got involved with some early research, which then led to my meeting a number of patients with what was then considered quite a mysterious illness. I became fascinated in this quest for understanding and treatment.
What are the symptoms?
Common symptoms are extreme fatigue, post-exertional malaise, muscle and joint pain, headaches, cognitive difficulties (brain fog), dizziness, sleep disorder, sore throats etc. many symptoms relate to overactivity of the immune system. Symptoms tend to come and go in a relapsing and remitting fashion.
What’s key to managing symptoms?
The patient needs to learn about their illness so they can then be taught to understand the things that may help manage the illness – such as stress management, minimising physical activity/exercise (which should be very cautious), sensible diet, pain and sleep management with medication if needed, and avoidance of activities that trigger relapses
What are main challenges with the disease?
Helping patients get a reliable diagnosis and then getting the necessary support they need for correct management which can enhance their chances of making a recovery. More information needs to be widespread about all this for both sufferers, carers, medical people and social welfare agencies.
How long does the disease usually last with treatment? Is remission common?
There is no time frame – and not always an apparent reason for recovery. Relapses are often due to doing too much or unexpected stress. The illness can last anything from 6 months to many years. Recovery rates are hard to gauge – but young people recover more readily than older people. Remissions are common, but may not be total or permanent. Some may never recover. There is no set lab test to diagnose the illness, and patients find it frustrating that we have to make a diagnosis solely on clinical grounds according to specific strict criteria. We may not always get it right!
What are some recent breakthroughs?
The exciting breakthroughs relate to understanding what is going on in the immune system and the brain, and also links between the bugs in the gut, the immune system and the brain. There is also research showing that there are some very specific unusual underlying changes in the body’s biochemistry of the individual with the illness. Work is progressing in Europe looking at treatments including drugs which initiate changes in the immune system. But research always takes time and nothing happens in a hurry – another frustration for patients.Work in Queensland and Stanford University may lead to a diagnostic test. Once the underlying mechanisms are fully understood, treatment research is more likely to be focused correctly.